A Woman's Journey With Rare Disease

Building A New Routine

This is my morning cocktail of current meds.

I have two liquid medicines I have to take, along with the foil wrapped horse pills, & pile of pills here. The pink capsules & yellow pill are immunosuppressants. The blue pill is my GERD medication. The rest are steroids, water pill, & other medications my team wants me to take.

I just thought people might find this interesting.

I know it may not look as imposing or big of a pile as is, but it is around a 20 pill cocktail all told. This is just the morning.

I have 8PM and then some also to take at bedtime.

I get my blood drawn at my hospital every Monday morning at around 7am (usually around 7:30) so I can remain on time with my meds at 8AM & my doctors can confirm that my levels of immunosuppression are where they want them.

I take this cocktail every morning with a bowl of Cheerios or Kix.

These liquids I have to take because I’m allergic to an antibiotic they usually give people.

The white bottle is what I call my yellow paint. I take that in the mornings to prevent pneumonitis.

The brown bottle I have to take 4 times a day to prevent thrush.

I also have data I have to collect throughout the day.

I start with weight & temperature right away after I get up.

My blood pressure I measure before or after my 8PM meds (in which I take a few less pills but still need the pink ones & the horse pills in the evening too). I also take another temperature in that hour.

Around lunch time & dinner time I test my glucose.

Sometime after 8am but before noon is when I usually get my breathing numbers measured.

My bestie & I developed a daily checklist to help build my routine & track some of this along with any concerning symptoms or additional meds (like pain or nausea meds if I need them) while I was in rehab but also for after I got home.

I admit I do consolidate the daily numbers into a calendar planner I take to my doctor visits so they can see how I’ve been doing & then they can see a few weeks trends.

For someone who is so digitally oriented, I’ve made a somewhat switch to analog (writing things down) because I find it helps reinforce & helps me remember things better than just plugging it into my phone.

Plus (other than the three devices mentioned below) I’m using equipment the hospital gave me to track some of this. Those are not connected devices.

There’s also that Type A in me that gets satisfaction from checking things off after I’ve done them.

I have alarms on my phone for some of this as well. My glucometer, thermometer, & blood pressure cuff all use apps on my phone but I have alarms to go off when I need to record something or take my meds. That’s usually 4 separate alarms. It does help me keep track.

I love how they are displayed & can also pull up history easily for whatever doctor needs it.

After this month or when they have me on steady, regular doses with little to no adjusting, I may move to a medication app or using my Pill Drill.

Right now, I use the pillbox my transplant pharmacist trained me on & gave me because the amount of medicine I take can still vary. This is still relatively small enough to keep on me easily.

There’s also a pill I take that you don’t see pictured here because it needs to be kept in the fridge.

Adjusting to this new life (even though I had anticipated and taken an immunosuppressant for a long time) was a bit of a learning curve at first.

It was a lot to keep track of, even for friends & family who were helping me along the way.

Trying to make this all more manageable was a full-time job at the start. It gets a bit easier each day.

This was a bit of a surprise to me at first.

The medication side effects seemed to bombard me at first & affect my attention. It sometimes made it hard to remember things. I wasn’t anticipating it being as strong as it was the first few weeks. I really felt spaced out or times where I would talk & wasn’t sure I was making sense.

That’s why I needed something like this & the list was the easiest & best way for me to remember or to check & see if I did something.

It still is…even though now I’ve adjusted to the meds & the side effects are less pronounced.

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3 thoughts on “Building A New Routine”

Great post …… I could have written the same thing almost 10 years ago. I started off on 55 pills/day plus 2 injections of Lovenox each day. Though, I was not on any liquid meds. Those 20+ pills in the morning is what I called my “breakfast of champions”. I use my phone alarms as reminders, but there also a number of apps available, which I have used as well. I’ve been late a handful of times, but have never missed a dose.

I’m an Excel guy and I love numbers and stats. The day after I got home from the hospital I started an Excel SS to help me track my vitals. This SS has grown and grown where I also track all labs, medical costs (out of pocket), & inventory my meds, have ALL medical procedures listed, all medically related phone number (ICE, doc’s, coordinators, ins, pharmacies, social worker, etc, etc). I can print out my med list and it also includes ALL procedures I’ve ever had, as well as all phone numbers ….. has been extremely helpful when visiting a new Dr, ER, or needing help on the road. I’ve blown the minds of coordinators with facts, figures, trends and (LOL) color graphs ….. and zillions of questions.

Will be more than happy to clean up a copy and sent to you. Works great on a PC, ok on an iPad, but is NOT phone friendly. Let me know.

wow, two injections a day? I just had to do one daily for a month & those hurt bad enough. 🙂 I barely had enough sites to give them. Thanks for offering your spreadsheet up – I’m a one page sheet or calendar girl myself. I get that spreadsheets work great but I guess I worked on too many in past jobs, that I get sick of looking at them for anything but my taxes 🙂